Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.
LOL nearly spilt my coffee over my comp then!
I found something interesting:
From what I remember, problems with RNase L have been found in association with CFS.
I get the feeling that each sample must now be tested by a person sitting at the right type of microscope and, while we may like to believe that's how tests are done, they don't actually do many of them like that any more.
I think before a test becomes widely available they design a way to almost automate the testing process. I don't really know what I'm talking about, though.
I must say, given your situation - which is wretched and I'm so sorry - WPI may well be interested in getting their hands on your blood. As might people doing prostate cancer research. You may be able to access testing others cannot.
Small compensation for a really stinking situation, I know.
Much improved health to you!
Fabulous find brother. Let's hope things continue to come out on this.
Andrew I agree with Koan. Contact WPI or Case Western. You might be very interesting to them.
Wall Street Journal
Retrovirus Linked to Chronic-Fatigue Syndrome
By AMY DOCKSER MARCUS
Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.
An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, a devastating condition about which there is little medical consensus. CFS is characterized by debilitating fatigue and chronic pain, among other symptoms, but diagnosis is generally made by ruling out other diseases, and there are no specific treatments.
Many patients say they are told by doctors that their problems are psychological, so a study showing a strong association between a virus and CFS is likely to change the field.
But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS. Researchers are just as
concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV. If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.
The study was done by researchers at the Whittemore Peterson Institute for
Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the
In September, researchers at the University of Utah and Columbia University
Medical Center found XMRV in 27% of the prostate-cancer samples they examined. That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.
Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. "NCI is responding like it did in the early days of HIV," says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.
Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus
permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.
So far, XMRV, known fully as xenotropic murine leukemia virus-related virus,
doesn't appear to replicate as quickly as HIV does. Scientists also don't know
how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.
Dr. Le Grice of the NCI said the highest priority now was to quickly develop a
validated blood test or other assay that could be used in doctors' offices to
determine who has XMRV. At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough
evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue. "A large effort is under way to answer all these questions," he said. "I do not want this to be cause for panic."
Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong
possibility. Dr. Mikovits said that using additional tests, the scientists
determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control. "Just like you cannot have AIDS without HIV, I believe you won't be able to find a case of chronic-fatigue syndrome without XMRV," Dr. Mikovits said.
At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer. NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.
The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.
Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that "in most cases, people's immune systems are probably able to control the virus." Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.
The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease.
At their home in Reno, the Whittemores' daughter, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.
Ms. Whittemore-Goad says she was a regular school girl, playing sports and
involved in school activities, until the age of 10, when she became ill with a
monolike virus that she couldn't shake. She said doctors first told her parents
that the illness was psychological, that she had school phobia and was under
stress from her parents. "We kept searching for an answer," says Ms.
Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.
Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.
Sitting on the couch next to her husband, whom she married six months ago after meeting, Ms. Whittemore-Goad says the news that she is infected with XMRV "made everything that has happened to me make sense." Brian Goad, her husband, said he felt relieved knowing "now we can find a way to treat and hopefully cure it." For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.
"At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia."
How many of us have been diaguessed with atypical multiple sclerosis?
said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London. "The same percentages are holding up,"
If the Neveda patients and the London patients have this surely then that's it cracked?!
This is what I really liked to hear
Of course there is danger; what if it doesn't work out? That would put egg on everyone's face and further discourage people from CFS research. That happened with the premature retroviral finding of Dr. DeFrietas in the 1990s.
One concern mentioned by an Article in Science is contamination; always a huge problem with viruses. Outside labs have to replicate this. That said you think top researchers from the National Cancer Institute and the Cleveland clinic whose reputations are at stake would be very very careful that everything was done correctly http://docs.google.com/gview?a=v&pi...&sig=AHBy-hZQ9k5g2rGKnfazfiSguDBAHU8qNQ&pli=1
If it works out I can only think it's a big big win for everyone. Researchers will finally have a strong focus to start working on a treatment. The research field itself gets a huge bounce. The fact that that workshop already happened is so invigorating to me. THe NIH has so much money - we've hardly touched it! If they and the CDC really got involved it would be breathtaking.
The CDC will be very important! They blew up Dr. DeFrietas findings when they could not replicate them. It ended everything right there. I hope Mikovits will be down there making sure they follow her testing protocol exactly. IF the CDC tries to replicate the study they'll have to use the same definition that the WPI did.
I don't think the CDC can screw this one up, the virus has already been implicated in prostate cancer and studied at reputable institutions. Science wouldn't have published this if they weren't very impressed with the data.
I think this is a big finding and I would be one happy woman if this was also found in ticks. It could explain to me how one person gets over lyme in a couple of weeks and another is crashed for life it seems. It could explain antibiotic resistance beyond the idea of biofilms or strain variability. Etc.
Great Pictures Kim!
The transmission question is a good one! In one of the releases they mentioned that it might be transmissible through mother's milk. It might also be transmitted sexually - they simply mentioned the fact that might be present in bodily fluids. I wonder if they've looked for in saliva - I assume they have. This was the first time interestingly enough - anywhere - that they were able to find a live virus. The virus was just discovered three years ago; there's obviously still a lot to learn.
One of the releases also questioned where this virus came from. I guess they were referencing JenBooks concern. As I remember they simply stated that it was not a laboratory escape; that it jumped from mice to humans at some point.
Now if they can find it they'll probably start testing old blood samples to see when it turns up in the blood supply.
Hey, our buddy Simon Wessely appears in the Independent article pooh-poohing it. Classy: http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html
By the way, I sure think the CDC can screw this up: their effort to replicate it will be based on Reeves's "unwell" definition of CFS.
Let's put our hope in Cleveland Clinic and WPI and other folks.
We have links on the front pages of the Wall Street Journal and the LA Times. It is making news.
This is a nice article from the LA Times.
They already have tested the blood supply and the virus has been around for at least 25 years - which of course makes sense.
Big Guns - Look who's speaking here - this guy leads and NCI's program on AID's and Cancer research! These are among the biggest guns of all - we've finally hit the big time - I hope to God we stay there - we deserve it after all this non-attention for decades .
"We are in the very early days," said Stuart Le Grice, director of the National Cancer Institute's Center of Excellence in HIV/AIDS and Cancer Virology, who organized the meeting but was not involved in the new study.
Behavioral Stuff - Note that they're finally getting this right about CBT: The only effective treatments are behavioral changes and antidepressants, and they are of limited benefit.
Dr. Reeves: This seems like a really weird statement by him -
. What is ubiquitous about XMRV? At most it appears that its found in about 3% of the population. That figure really shocked the researchers. How is it ubiquitous?
This is pure Reeves: "Reeves said, the major flaw of the study is that there is not enough information about how subjects were selected to rule out any bias in choosing them, which could have influenced the results" - he is fixated on this bias question! That's why he does random sampling - which in our case is a pretty weak results.
It will be interesting to find out just how these patients were chosen.
[/QUOTE]Copyright 2009, The Los Angeles Times
OMG...this may be why my 22 y/o son and husband are both in the process of being diagnosed with CFS.... We happen to have an MD appointment in the AM..I will print out some of this info.
Is there anyoe else who's heart is racing? Anxious?
I have thought for years CFS might be viral...but retro-viral?????
My spouse had it (in remission thanks to valtrex and immune globulin) and now I do. This news isn't surprising to me.
"Unfortunately, Reeves said, the major flaw of the study is that there is not enough information about how subjects were selected to rule out any bias in choosing them, which could have influenced the results."
from the LA Times story
First hints that Reeves will try to replicate the results using his ridiculous catch-all definition of CFS. Guaranteed to fail.
But I think we don't need him anymore. WPI and other researchers will be able to apply to any number of granting agencies for research funds based on this success.
WPI on transmission and FM
From the FAQ's by the WPI.
It has been found in a few fibromyalgia patients that they've tested. They have yet to test other neuro- immune diseases like autism and multiple sclerosis. (That will be interesting!).
It could be transmitted through the blood, semen and or mother's milk. I don't think any of those was a factor for me when I first got ill. Of course it's very possible that it doesn't immediately affect everybody; that it takes a stress trigger or something like that for some people.
Which brings up the question about people who get ME/CFS after an EBV infection or parvovirus or something else. How does this virus play into that scenario? Did it weaken the immune system????
What is the link between XMRV and ME/CFS, fibromyalgia and other neuro-immune diseases?
Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases.
A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.
How is XMRV transmitted?
XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses.
Can you catch ME/CFS?
Causation of ME/CFS is likely to be a multi-factorial process which occurs in a susceptible person with common viral co-infections. Chronic fatigue syndrome (ME/CFS) is a complex, systemic neuro-immune disease that is estimated to affect over one million Americans and 17 million people worldwide. ME/CFS has traditionally been diagnosed by the exclusion of other similarly presenting conditions, such as MS and lupus, and by a series of symptoms; making the diagnosis an expensive and difficult process. Until now, a single viral link (while suspected by many) had not been made because so many common viruses have been found to be reactivated in persons with ME/CFS. This finding suggests a role for XMRV in the pathogenesis of ME/CFS and creates a better understanding of the disease. Our work suggests but does not prove that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.
I almost get a sense that Dr. Reeves hopes this isn't true.... He is making statements like slow down, can't be sure, we have to replicate study, etc., etc.
I am grateful that there are some big guns doing the study. He will have a hard time shooting them all down.
I just hope when the interviews start on News programs that he is not the representative. He will try to muddy the waters.
I personally am hopeful. This is a light shining on it and that has to be a good thing.
CDC - I agree about Reeves. The researchers involved in this right now are real names. Reeves leads a small program on a disease no one is interested in. It's not exactly the career path you give one of your hot researchers. If the NCI can duplicate the results - and they'll certainly be trying - given all the ruckus this has raised - I think we should be fine.
Bigger than ME/CFS - This is far greater than ME/CFS; the testing of the healthy controls founded in almost 4% of them - that's apparently about 10 million people in the US who could have a virus that is either associated with a disabling condition or one of our biggest cancer killer's. One researcher speculated that this virus - this very primitive retrovirus - could be responsible for a host of diseases.
That's all good news for us - this will get plenty of research funding!
WPI- What an enormous difference Annette Whittemore, Dan Peterson and Judy Mikovits and the Whittemore Peterson Institute have made in such a short time. As I noted earlier the building isn't even open yet!
I love how they used ME/CFS throughout their FAQ's.
Lots of things to think hard about. My twin sister has been having CFS symptoms that have been reving up in the last few weeks. We talked a few days ago and both feel that she is coming down with the same disease. My oldest son has aspergers, ocd, tourettes, adhd. The WP institute says that they will be studing this retrovirus in other diseases such as autism and MS. Lots to think about. Pieces of the puzzle are coming together and I beleive will answer questions for alot of diseases.
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